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PubMed This is a summary of 26 peer-reviewed journal articles Updated
Cardiology

How AL Amyloidosis Affects Your Body

At a Glance

AL amyloidosis is a multi-system condition where misfolded proteins build up in organs, most commonly the heart and kidneys. Symptoms vary based on the affected organs but often include shortness of breath, leg swelling, foamy urine, and nerve tingling.

AL amyloidosis is a multi-system condition, meaning it can affect almost any part of the body. Because amyloid fibrils (misfolded proteins) can settle in various organs, no two patients have the exact same symptoms [1][2]. Understanding which organs are involved is a key step in tailoring your treatment and managing your daily health [3].

Common Patterns of Organ Involvement

Most patients have involvement in one or two major organs at the time of diagnosis [4]. The heart and kidneys are the most frequent sites of amyloid deposition [1][5].

  • Cardiac (Heart): Amyloid deposits can cause the heart walls to become thick and stiff, leading to amyloid cardiomyopathy [6]. This often feels like shortness of breath during light activity, fatigue, or swelling in the legs (edema) [7][8].
  • Renal (Kidneys): When amyloid affects the kidneys, they begin to “leak” protein into the urine, a condition called nephrotic syndrome [9]. You might notice foamy urine or significant swelling in your legs and ankles [10][11].
  • Nervous System: Amyloid can damage the nerves in two ways. Peripheral neuropathy often causes “pins and needles,” numbness, or burning pain in the hands and feet [12][13]. Autonomic neuropathy affects the systems you don’t control consciously, leading to dizziness when standing up (low blood pressure), diarrhea, or constipation [14][2].
  • Hepatic & GI (Liver and Gut): Involvement of the liver may cause it to enlarge (hepatomegaly), though you might not feel symptoms until it is quite advanced [15]. Gastrointestinal involvement can cause “early satiety” (feeling full after just a few bites), weight loss, or changes in bowel habits [16][10].

“Red Flag” Signs

There are two classic physical signs that are highly specific to AL amyloidosis, often referred to as “red flags” by specialists. While they are famous in medical textbooks, they actually only occur in a minority of patients [17][18].

  1. Macroglossia (Enlarged Tongue): The tongue may become large, firm, and develop indentations from the teeth along the edges [19][20]. This can make speaking, swallowing, or even breathing during sleep more difficult [21].
  2. Periorbital Purpura (“Raccoon Eyes”): This is a distinctive purplish bruising or bleeding around the eyes [20][22]. It happens because amyloid deposits make the tiny blood vessels (capillaries) in the skin very fragile, causing them to leak even after a simple sneeze or cough [23].

Why Symptoms Vary

Your specific symptoms are often tied to the type of “light chain” your body is producing. For example, patients with the lambda (λ) light chain type may be more likely to have kidney or nerve involvement, while the kappa (κ) type is sometimes associated with more liver involvement [24]. Regardless of where the amyloid is, the goal of modern therapy is to stop the production of these proteins so your organs have a chance to stabilize and, in many cases, improve [25][26].

Common questions in this guide

What are the most commonly affected organs in AL amyloidosis?
The heart and kidneys are the most frequently affected organs in AL amyloidosis. When these organs are involved, patients often experience shortness of breath, fatigue, significant leg swelling, and foamy urine.
Why do my hands and feet tingle with AL amyloidosis?
Amyloid deposits can damage your nerves, leading to a condition called peripheral neuropathy. This nerve damage frequently causes sensations like tingling, pins and needles, numbness, or a burning pain in your hands and feet.
Why do I get dizzy when I stand up quickly?
Dizziness upon standing is often caused by autonomic neuropathy. This occurs when amyloid proteins damage the nerves that control your involuntary bodily functions, making it difficult for your body to regulate blood pressure when you change positions.
What does macroglossia mean on my diagnosis?
Macroglossia is an enlarged tongue caused by amyloid deposits building up in the tissue. It can make the tongue feel large, firm, and develop teeth indentations along the edges, which may cause difficulty with speaking, swallowing, or breathing while asleep.
What are the red flag signs of AL amyloidosis?
The two classic red flag physical signs are an enlarged tongue (macroglossia) and purplish bruising or bleeding around the eyes, sometimes called raccoon eyes. These occur because amyloid deposits make tissues stiff and tiny blood vessels extremely fragile.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Which of my organs are currently affected, and what tests confirmed this involvement?
  2. 2.What is the current level of protein in my urine, and how will we monitor my kidney function?
  3. 3.How is my heart function, and what specific cardiac biomarkers (like NT-proBNP) are we tracking?
  4. 4.Are my symptoms like dizziness or digestive issues caused by amyloid deposits in my nerves or GI tract?
  5. 5.How will my treatment plan change if we see improvement in my organ function?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (26)
  1. 1

    Proposed Cardiac End Points for Clinical Trials in Immunoglobulin Light Chain Amyloidosis: Report From the Amyloidosis Forum Cardiac Working Group.

    Maurer MS, Dunnmon P, Fontana M, et al.

    Circulation. Heart failure 2022; (15(6)):e009038 doi:10.1161/CIRCHEARTFAILURE.121.009038.

    PMID: 35331001
  2. 2

    Peripheral Nervous, Hepatic, and Gastrointestinal Endpoints for AL Amyloidosis Clinical Trials: Report from the Amyloidosis Forum Multi-organ System Working Group.

    Mauermann ML, Clarke JO, Litchy WJ, et al.

    Advances in therapy 2023; (40(11)):4695-4710 doi:10.1007/s12325-023-02637-4.

    PMID: 37658177
  3. 3

    Supportive Care for Patients with Systemic Light Chain Amyloidosis.

    Wong SW, Fogaren T

    Hematology/oncology clinics of North America 2020; (34(6)):1177-1191 doi:10.1016/j.hoc.2020.08.007.

    PMID: 33099432
  4. 4

    A Modern Primer on Light Chain Amyloidosis in 592 Patients With Mass Spectrometry-Verified Typing.

    Muchtar E, Gertz MA, Kyle RA, et al.

    Mayo Clinic proceedings 2019; (94(3)):472-483 doi:10.1016/j.mayocp.2018.08.006.

    PMID: 30770096
  5. 5

    Clinical characterization and outcomes of a cohort of colombian patients with AL Amyloidosis.

    Lacouture Fierro JA, Ribero Vargas DA, Sánchez Cano J, et al.

    Colombia medica (Cali, Colombia) 2023; (54(3)):e2025667 doi:10.25100/cm.v54i3.5667.

    PMID: 38107838
  6. 6

    Systemic immunoglobulin light chain amyloidosis.

    Merlini G, Dispenzieri A, Sanchorawala V, et al.

    Nature reviews. Disease primers 2018; (4(1)):38 doi:10.1038/s41572-018-0034-3.

    PMID: 30361521
  7. 7

    AL Amyloidosis: Current Chemotherapy and Immune Therapy Treatment Strategies: JACC: CardioOncology State-of-the-Art Review.

    Bianchi G, Zhang Y, Comenzo RL

    JACC. CardioOncology 2021; (3(4)):467-487 doi:10.1016/j.jaccao.2021.09.003.

    PMID: 34729520
  8. 8

    Cardiac Care of Patients with Cardiac Amyloidosis.

    Itzhaki Ben Zadok O, Kornowski R

    Acta haematologica 2020; (143(4)):343-351 doi:10.1159/000506919.

    PMID: 32408301
  9. 9

    Systemic Amyloidosis Recognition, Prognosis, and Therapy: A Systematic Review.

    Gertz MA, Dispenzieri A

    JAMA 2020; (324(1)):79-89 doi:10.1001/jama.2020.5493.

    PMID: 32633805
  10. 10

    Immunoglobulin light chain amyloidosis diagnosis and treatment algorithm 2021.

    Hasib Sidiqi M, Gertz MA

    Blood cancer journal 2021; (11(5)):90 doi:10.1038/s41408-021-00483-7.

    PMID: 33993188
  11. 11

    The evolving spectrum of kidney amyloidosis: advances in diagnosis, typing and treatment.

    Allinovi M, Trivioli G, Gaudio C, et al.

    Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association 2025; (40(10)):1826-1837 doi:10.1093/ndt/gfaf042.

    PMID: 40036358
  12. 12

    Neuromuscular amyloidosis: Unmasking the master of disguise.

    Pinto MV, Dyck PJB, Liewluck T

    Muscle & nerve 2021; (64(1)):23-36 doi:10.1002/mus.27150.

    PMID: 33458861
  13. 13

    Light-Chain Amyloidosis With Peripheral Neuropathy as an Initial Presentation.

    Qian M, Qin L, Shen K, et al.

    Frontiers in neurology 2021; (12()):707134 doi:10.3389/fneur.2021.707134.

    PMID: 34650504
  14. 14

    Challenges in the management of patients with systemic light chain (AL) amyloidosis during the COVID-19 pandemic.

    Kastritis E, Wechalekar A, Schönland S, et al.

    British journal of haematology 2020; (190(3)):346-357 doi:10.1111/bjh.16898.

    PMID: 32480420
  15. 15

    The clinical features and outcomes of systemic light chain amyloidosis with hepatic involvement.

    Zhao L, Ren G, Guo J, et al.

    Annals of medicine 2022; (54(1)):1226-1232 doi:10.1080/07853890.2022.2069281.

    PMID: 35481407
  16. 16

    Amyloidosis for the Gastroenterologist: A Comprehensive Systematic Review of Diagnosis and Management of Gastrointestinal Manifestations.

    Tang MJ, Tay TY, Gibbs S, Niewiadomski O

    Journal of gastroenterology and hepatology 2025; (40(12)):2842-2856 doi:10.1111/jgh.70083.

    PMID: 41058263
  17. 17

    Primary Systemic Amyloidosis with Unusual Dermatological Manifestations: A Rare Case Report.

    Vyas K, Morgaonkar M, Gupta S, Jain SK

    Indian journal of dermatology 2016; (61(2)):216-8 doi:10.4103/0019-5154.177767.

    PMID: 27057028
  18. 18

    Systemic Immunoglobulin Light Chain Amyloidosis-Associated Myopathy: Presentation, Diagnostic Pitfalls, and Outcome.

    Muchtar E, Derudas D, Mauermann M, et al.

    Mayo Clinic proceedings 2016; (91(10)):1354-1361 doi:10.1016/j.mayocp.2016.06.027.

    PMID: 27712634
  19. 19

    Systemic Amyloidosis Caused by Monoclonal Immunoglobulins: Soft Tissue and Vascular Involvement.

    Hoffman JE, Dempsey NG, Sanchorawala V

    Hematology/oncology clinics of North America 2020; (34(6)):1099-1113 doi:10.1016/j.hoc.2020.08.004.

    PMID: 33099427
  20. 20

    Periorbital Purpura: A Key Finding in Identifying Hematological Disorders.

    Ono R, Iwahana T, Aoki K, et al.

    Clinical case reports 2025; (13(2)):e70237 doi:10.1002/ccr3.70237.

    PMID: 39963189
  21. 21

    High prevalence of recurrent nocturnal desaturations in systemic AL amyloidosis: a cross-sectional pilot study.

    Mahmood S, Sovani M, Smith P, et al.

    Sleep medicine 2017; (32()):191-197 doi:10.1016/j.sleep.2016.11.021.

    PMID: 28366333
  22. 22

    A 64-year-old woman with raccoon eyes following kidney biopsy: a case report.

    Mei S, Zhao Y, Li L, et al.

    BMC nephrology 2020; (21(1)):140 doi:10.1186/s12882-020-01770-4.

    PMID: 32303194
  23. 23

    Do Not Ignore Those Raccoon Eyes; They May Indicate Lethal AL Amyloidosis.

    Sapkota S, Kuehl S, Pulluri B

    Case reports in oncology 2022; (15(3)):1039-1048 doi:10.1159/000527169.

    PMID: 36636680
  24. 24

    Light chain type predicts organ involvement and survival in AL amyloidosis patients receiving stem cell transplantation.

    Sidiqi MH, Aljama MA, Muchtar E, et al.

    Blood advances 2018; (2(7)):769-776 doi:10.1182/bloodadvances.2018016782.

    PMID: 29615413
  25. 25

    A longitudinal evaluation of health-related quality of life in patients with AL amyloidosis: associations with health outcomes over time.

    Sanchorawala V, McCausland KL, White MK, et al.

    British journal of haematology 2017; (179(3)):461-470 doi:10.1111/bjh.14889.

    PMID: 28850697
  26. 26

    Response of factor X deficiency to darutumumab in the treatment of AL amyloidosis: a novel finding.

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    PMID: 33827877

This page is for informational purposes only and does not replace professional medical advice. Always consult your healthcare provider or specialist regarding your specific AL amyloidosis symptoms and organ involvement.

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